Frequently Asked Questions

You have questions? We have answers! The following is a list of frequently asked questions grouped by category. If your concern is not addressed here and you still require support, please let us know by sending an email to: info@brainhealthregistry.org

About the Brain Health Registry

What is the Brain Health Registry (BHR)?

The Brain Health Registry is a web-based, observational research study designed to effectively capture extensive amounts of data that may enable researchers to more efficiently identify, assess, and longitudinally monitor the cognitive changes associated with the progression of neurodegenerative diseases and brain aging.

Participants in the Brain Health Registry complete online questionnaires and tests that, over time, provides researchers with valuable information and allows them to better track changes in an individual’s health, lifestyle, and cognitive function. These changes could potentially be important indicators of a person’s brain health and could help to best identify and recruit ideal candidates for medical research and future clinical trials. This is the first large-scale neuroscience project that leverages online possibilities in this way.

By creating a large pool of pre-qualified potential participants, the Brain Health Registry can make clinical trials for neurological diagnostics and treatments faster, better, and more innovative – all of which may accelerate the discovery of effective treatments for brain disease and disorders, such as Alzheimer’s, Parkinson’s, depression, PTSD, and many more.

What is your connection to University of California San Francisco (UCSF)?

The Brain Health Registry is led by top medical researchers at the University of California, San Francisco. Because the Brain Health Registry is overseen by UCSF, all our study activities are approved and regulated by the UCSF Institutional Review Board (IRB), or ethics board.

Who can join the Brain Health Registry?

Anyone 18 years and older can join the Brain Health Registry—including healthy people, people with health or memory concerns, people with brain disease, people with a history of brain disease in their family and those without it.

The more people who join and agree to complete questionnaires and brain tests, the more valuable the information gathered will be and the greater impact researchers can have to ultimately accelerate the discovery of treatments for brain disease, such as Alzheimer’s, Parkinson’s, and many more.

The number of participants in the study is growing every day and we are working hard to hit our target of 100,000 participants.

How do I join?

Joining the Brain Health Registry is easy and only takes a few minutes. If you would like to join now, please click here to begin the registration process. You will first be asked to provide your name, email address, birth month/year, and postal code. After registering, you will create your Brain Health Registry account by setting a unique user name and password. We recommend choosing a user name that is different than your email address. Please remember to only use this designated user name when logging into the Brain Health Registry.

The next step is to review and agree to the informed consent form, which outlines the study in detail and lets you know your role and your rights as a participant in the study. Volunteers are not considered enrolled participants until they have agreed to the consent form.

From there, the participation process involves answering a set of questionnaires and taking online brain tests.

Why do I have to agree to a consent form?

The Brain Health Registry is a research study that is overseen by the UCSF Institutional Review Board (IRB), or ethics board. For your privacy and protection, you are required to sign a consent form before you can participate. The consent form outlines your role and rights as a research participant, as well as the purpose of the study and the risks and benefits associated with study participation.

You may choose to decline participation after reviewing the informed consent form. You may also withdraw your participation, at any time, after agreeing to the consent form as this is a voluntary research study.

Can I get a copy of the consent form I signed?

Yes. You may print a copy of the informed consent form for participation in the Brain Health Registry before agreeing.

After agreeing, you may access and print a copy of the consent by logging into your Brain Health Registry account and clicking “My Profile” in the top right corner. Under the “Consent” section in the bottom right corner, you have the option to either “View” or “Print” a copy of the consent form.

What to Expect as a Participant

What is expected of me?

Once you give consent, you will be asked to complete questionnaires about your health, lifestyle and medical history. You will also be asked to take online brain tests that help us understand your ability to remember, stay focused, process and organize new information. You do not have to answer all the questionnaires or complete all brain tests in one sitting. You also do not have to complete all study tasks to remain enrolled in the Brain Health Registry.

We ask participants to return to the Brain Health Registry every 3-6 months to complete follow-up questionnaires and retake brain tests. Our researchers track this information and, over time, this will help them better understand how the human brain changes and develops.

You may also be asked to agree to have your medical records included in the Brain Health Registry or to provide a sample of your saliva for genetic testing. These are optional and voluntary.

How much time does it take to participate?

Most of the study tasks take less than 5 minutes each to complete. The longest takes about 15 minutes. You do not need to complete all the questionnaires and brain tests at one time – you can leave the website and return when it is convenient for you.

Altogether, it takes approximately one and a half hours from start to finish, whether in a single session or over the course of several visits.

Our hope is that participants come back to the Brain Health Registry every 3-6 months for their follow-up visit to complete more questionnaires and brain tests.

Is there a cost or will I be paid to join the Brain Health Registry?

There is no cost to join. You will not be paid to join or participate. The Brain Health Registry is relying on volunteers to participate in this project.

By joining the Brain Health Registry, will I receive healthcare services?

No. Participation in the Brain Health Registry does not offer direct access to any medical services or advice, nor does it endorse or provide any medical or healthcare product. If you have any questions or concerns about your health, please talk to your doctor.

When does the study end?

There is currently no end date to the study. As long you are willing to participate, we will collect data.

How often should I expect to receive emails from the Brain Health Registry?

Email is the primary way we communicate with our participants. After joining the registry, you will automatically receive two emails - one thanking you for your participation and another asking you to confirm your email address. It is important to confirm your email address for extra security measures.

We send periodic reminder emails asking you to come back to the Brain Health Registry website to complete unfinished tasks. We also send emails when it is time for you to come back for a follow-up visit (every 3-6 months). We consider these emails part of our study communication and require them for participants.

Additionally, our participants can opt to receive the Brain Health Registry newsletter that we send out regularly. Our newsletters may feature Brain Health Registry updates and announcements, general educational resources focused on brain health, and exciting research topics that are new and relevant in the field of neuroscience. You can choose to unsubscribe from our newsletters at any time, however, you will continue to receive study emails so long as you are enrolled as a Brain Health Registry participant.

Participating in the Brain Health Registry

I am unable to complete study tasks because I do not have access to a computer or I am too busy right now. Will this affect my participation in the Brain Health Registry?

We understand that you may not be able to return to the Brain Health Registry to complete study tasks. No problem! We hope that when you are able to, you will take some time to return to the website to answer questionnaires and take brain tests. In the meantime, please disregard any reminder emails you may receive.

I cannot complete certain study tasks because of a disability. Can I continue to participate in the Brain Health Registry?

Yes. Participants that experience difficulties completing brain tests or questionnaires due to any conditions are welcome to participate in our study. We do not require participants to complete all study tasks to remain enrolled in the Brain Health Registry. We ask that participants try their best and then move on to any remaining study tasks.

Additionally, please feel free to opt out of any study task by clicking on one of the links that reads, “I can’t do this task” or “I don’t want to do this task” and the task will end.

I don’t know how to use computers and/or I struggle with technology. Can I have someone assist me in completing study tasks in the Brain Health Registry?

We welcome assistance in completing the questionnaires. However, we ask that the brain tests be completed independently and without help from others.

One of the goals of the Brain Health Registry is to determine whether information about a person’s thinking and memory can be validly collected from self-administered online tests. Therefore, it is most helpful for us to have each participant complete the brain test entirely on their own. Even if you do not understand the instructions, please try your best and complete the brain tests by yourself, as this information is still valuable for us to collect.​

If, for some reason, you are unable to complete brain tests without assistance, that’s okay. You do not need to complete all study tasks to remain enrolled in the Brain Health Registry. Please opt out of the study task by clicking on one of the links that reads, “I can’t do this task” or “I don’t want to do this task” and the task will end.

Will I get results from my brain tests?

At this time, we do not provide participants with feedback or results to brain tests. The reason for this is that the brain tests are not designed as diagnostic assessments and therefore should not be used as the basis of any medical decisions. However, we are currently exploring providing other types of feedback as a future option.

Can I get a copy of my answers to questionnaires?

Upon completion of some of the questionnaires, there may be a summary page that displays all questions and each of your responses. On this page, you will have the opportunity to download a printable PDF version of your recorded answers by clicking the “Download PDF” button.

Unfortunately, after leaving the summary of responses page, there is no way for us to go back and retrieve your answers to the questionnaire.

I’m trying to fill out a questionnaire but I don’t see an answer option that perfectly represents me. What do I do?

We understand that you might not see an answer choice that exactly matches your situation. Please do your best to select an answer option that best describes your situation, even if it’s not exact. It may be helpful to know that the questions and possible answers come from standard, validated scientific assessments – which is why we choose not to alter the question and/or answer options.

Participation in Additional Research

I’m interested in participating in additional research studies. How do I learn about these?

For Brain Health Registry participants who have indicated that they are interested in being contacted for future studies, we may send an email about additional research studies that we think they may qualify for. Each additional research study has a specific set of eligibility requirements that Brain Health Registry participants must meet to qualify. When we identify studies that we think a participant is eligible for, we will send an email describing the study and giving more information about how to participate. Participation in additional research is optional and does not affect participation in the Brain Health Registry.

Why haven’t I received any information about participating in additional research?

If you have yet to receive a study opportunity email from us, it may be because you do not meet study eligibility criteria for the research studies we are currently emailing about. However, it may also mean that we do not have enough information from you to determine eligibility. We encourage you to complete all remaining study tasks in the Brain Health Registry at your earliest convenience.

My Study Partner

What is a study partner?

A study partner is someone who knows you well enough to answer questions about your brain health and ability to perform day-to-day activities. For example, he/she could be a friend, caregiver, family member or spouse. He/she does not have to live with you.

Study partners log into the Brain Health Registry website to answer questions about you and some questions about themselves. They may also be asked to complete online brain tests.

Having the pair of you participate in the Brain Health Registry together can help us gain a more complete understanding of brain health, including information about your day-to-day functioning and quality of life. To learn more about the Study Partner Portal, please click here.

What if I don’t have a study partner?

You are not required to have a study partner to continue participation in the Brain Health Registry.

Please let us know that you do not have a study partner by beginning the “My Study Partner” questionnaire and indicating this in the survey. The first question within the Study Partner questionnaire asks whether you have a study partner. If you answer “No”, the questionnaire will end there.

I'm concerned that my care recipient/study partner is a danger to him/herself or others. What should I do?

If you feel that your care recipient/study partner is experiencing a medical or psychiatric emergency, please contact 911. In addition, we would like to provide the following resources to you, which may be helpful:

National Suicide Prevention Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.https://suicidepreventionlifeline.org/
1-800-273-8255

National Alliance on Mental Illness is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.http://www.nami.org/
1-800-950-6264

Alzheimer’s Association Helpline provides reliable information and support to all those who need assistance. The 24/7 Helpline serves people with memory loss, caregivers, health care professionals and the public.
1-800-272-3900

NIH Alzheimer’s Disease Education and Referral Center compiles, archives, and disseminates information concerning Alzheimer's disease for health professionals, people with AD and their families, and the public.https://www.nia.nih.gov/alzheimers
1-800-438-4380

Withdrawing Participation

What if I no longer want to participate in the Brain Health Registry?

You may withdraw consent at any time. To do this, log into the Brain Health Registry and go to “My Profile” in the upper right corner. Once you are in your profile, simply click the button “Withdraw Consent”. Alternatively, you can email info@brainhealthregistry.org to let us know that you’d no longer like to participate in the study.

In this case, we will remove you from our study communication list. However, the data you have already provided while you were a participant will not be removed or deleted from our database.

Please know that you can rejoin the Brain Health Registry at any time after you have withdrawn from the study. All you need to do is login to the BHR website with your BHR credentials and resign our consent form.

Your Information and Privacy

What is my information used for?

The information collected about your identity, health, behavior, and cognitive functioning will be analyzed for research purposes. The results from these analyses may be published in scientific journals and presented at research conferences. Publications and presentations will never disclose any personal identifiable information and your privacy will always remain protected.

Based on the needs of the scientific and medical communities, we may use your information to identify potential participants for clinical trials to test diagnostic tools and potential therapies for brain disorders. Brain Health Registry participants will only be contacted about participating in clinical trials that have already been reviewed and approved by the Institutional Review Board (also known as ethics boards). Once given the opportunity to participate in such a clinical trial, the choice to participate will always be yours.

Participation in the Brain Health Registry involves completing some cognitive assessments through commercial providers and some of these assessments require an internet connection to complete. Due to this, there may be increased confidentiality risks associated with study participation. However, no personal identifiable information will be provided to our commercial providers and we take every step possible to ensure the information you provide to the Brain Health Registry is kept safe and secure.

Will the information I give and my cognitive test results be shared with others?

The personal information you provide to the Brain Health Registry is only used for the purposes stated in our consent form and privacy statement. Information about participants may be shared with our collaborators, but that data is de-identified (meaning the data we provide cannot be traced back to you).

You may change your home address and/or telephone number at any time. To do this, login to the Brain Health Registry, go to your profile page by selecting "My Profile" in the upper right part of your screen, and enter your updated contact information.

If you would like to change your email address, please send us an email at info@brainhealthregistry.org requesting this. In your email, please provide the email address you used when you first joined the Brian Health Registry and the new email address you would like us to use.

Brain Tests

Will I get results from my brain tests?

At this time, we do not provide participants with feedback based on the results to brain tests. The reason for this is that the brain tests are not designed as diagnostic assessments and should not be used as the basis of any medical or any other decisions. However, we are currently exploring this as a future option.

The NeuroCognitive Performance Test will not begin. What do I do?

Currently, this brain test requires Adobe Flash Player. If you are using a laptop or desktop computer and are unable to access this test, you may need to download and install the latest version of Adobe Flash Player. You may also need to update your browser settings to enable this program to work. For instructions on how to install and enable Adobe Flash Player, please click here.

If you are trying to take this test from a tablet or smartphone, the test will not work. Our website is not currently optimized for use with mobile devices. We are working on making our site more mobile-friendly. In the meantime, if possible, please return to the Brain Health Registry from a desktop or laptop computer.

I was redirected to the Lumosity login page. What should I do?

Brain Health Registry participants take the Lumosity NeuroCognitive Performance Test for free, and without having to separately login to the Lumosity website. That said, participants will be redirected to the Lumosity website to access their NeuroCognitive Performance Test. This will be done seamlessly, and again without having to login to the Lumosity website. If you have been redirected to the Lumosity login page, please notify us by sending an email to info@brainhealthregistry.org.

I'm unable to begin the Card Test. What now?

Google Chrome has built-in Flash Player, called "Pepper Flash," that is not compatible with Cogstate's Card Test. We recommend logging into the Brain Health Registry from another Internet browser, such as Mozilla Firefox, Safari, or Internet Explorer.

Additionally, the Card Test currently requires Adobe Flash Player. If you are using a laptop or desktop computer and are unable to open this test, you may need to install the latest version of Adobe Flash Player and update your browser settings to enable this program to work. For instructions on how to download Adobe Flash Player and change your browser settings, please click here.

If you are trying to take this test from a tablet or smartphone, the test will not work. Our website is not currently optimized for use with mobile devices. We are working on making our site more mobile-friendly. In the meantime, please return to the Brain Health Registry from a desktop or laptop computer if possible.

I am worried that I didn’t do my best on a brain test. Can I take the test again?

Unfortunately, participants are not able to retake brain tests at this time. We understand that you have concerns about your performance on these tests, as you may have been distracted when you took them. Not to worry. When you retake brain tests at your follow-up visits, we will get a better sense of your brain function. One bad score won’t completely skew your overall snapshot of brain health.

Technical Issues and Support

My partner and I share an email address. Can we both use this email address to join the Brain Health Registry?

Yes. In this case, we ask that you enter unique user names when registering as this is how we will distinguish between accounts. Please only use this unique user name to login to the Brain Health Registry.

To prevent mistakenly completing study tasks intended for a different person, we recommend double checking that you are logged into your account before starting any questionnaires and/or brain tests. To do this, please click on ‘My Profile’ on the top right corner of the screen after logging into your account. It will bring you to the profile account page, and at the top, you will see the person associated with the profile (“My Profile | Your Name”).

I am having trouble logging into the Brain Health Registry. What should I do?

If you cannot login to the Brain Health Registry, we ask that you first check to make sure you are using the correct user name that you designated when you created your account. After that, we recommend resetting your password, writing it down, and saving it in a safe place. To reset your password, please follow the steps below:

4) An email will be sent to your inbox with the next instructions. This email will include a temporary link so that you can reset your password. We recommend clicking this link and resetting your password soon after receiving this email, as the link will expire in about 24 hours.

Which study tasks can I complete using my smartphone or tablet?

Currently, the Brief Memory Test and ALL the questionnaires are accessible using a smartphone or tablet.

The NeuroCognitive Performance Test and the Card Test both require Adobe Flash Player, and are therefore not compatible with mobile devices. If you are trying to take these tests from a tablet or smartphone, the tests will not work.

If possible, please return to the Brain Health Registry from a desktop or laptop computer, as they are more likely to have Adobe Flash Player. If this not possible, not to worry. You do not have to complete all study tasks to remain enrolled in the Brain Health Registry.

We would like to emphasize that even if you do not have access to a computer or laptop, you can still make very meaningful and valuable contributions to the Brain Health Registry by completing all the questionnaires and the Brief Memory Test.

I keep receiving reminder emails to complete study tasks. How do I know which study tasks still need to be completed?

If you have remaining unfinished study tasks in your current time point, the Brain Health Registry will send you periodic reminder emails to complete them.

A check mark next to the study task name is used to indicate if that specific task has been completed. If there is no check mark, please click on that task to complete it. Completing all study tasks makes a big difference, as finishing the entire set of questionnaires and brain tests is key for researchers to gain the most accurate representation of your overall brain health.

My answers are not saving. How do I make sure that you are receiving my information?

When completing the questionnaires, we recommend answering all questions in the entire questionnaire to ensure that your answers are recorded and saved. At the end of each questionnaire, there may a page that displays the summary of your responses. Click the “Next” button on that summary page to save and submit your answers.

I made a mistake in answering a question and cannot go back to fix it. Can I change my answer?

Unfortunately, we are not able to update questionnaires to add additional information or change previously entered information. We ask that when you come back to the Brain Health Registry for your next follow-up visit, that you provide your updated answers at that time.

Personal Motivations

Theresa Walsh with her godfather.

"My godfather has Parkinson's. He's a priest, and the disease is taking away his ability to preach. I signed up with him in mind. If, in the long run, this can help save and empower voices like his, it will be a great thing. And I'd like to be a part of it."